Published 2016: I update this post every year at the bottom of the post with the current status of the Hidradenitis Suppurativa, my hidradenitis suppurativa diet and my health!
As of late, I have been contemplating a lot about where I am. The last six months have been some of the most testings of my life. I was figuring out what is my hidradenitis suppurativa diet. I have made enormous lifestyle changes. I have seen a lot of success, at times, and others were painfully frustrating- filled with relapses, flares, and standstills. Being a part of the online Autoimmune Paleo community has been one of my biggest comforts. Although, I don’t see my disease well represented in it- I know the reason… We, all of us who suffer from Hidradenitis Suppurativa, suffer in silence. I use the word suffer knowingly. There is no living with HS, there is, often, only pain.
What Is Hidradenitis Suppurativa?
Hidradenitis Suppurativa is a chronic, debilitating skin condition where your body is riddled with boils, abscesses, wounds, or scars. It often starts as a lump or a pimple in your groin or underarm and usually gets worse & worse, leaving a lot of people handicapped. It can affect one to several areas of your body. While our faces might glow, and people say… but your skin looks great! Underneath our clothes, there is a war going on! To learn the science behind HS check out my Hidradenitis Suppurativa Survival Guide.
HS affects delicate areas, and as such, makes it really hard for people to talk about. Only in threads, in closed groups, do people often feel comfortable to commiserate of the painful boils surrounding their genitals, breasts, underarms, and groin. I get it. People who have known me my whole life do not know what I have suffered. Hiding my scars became an art, coming up with excuses for wincing when I sat down or walked. Always changing away from others. Shorts at the beach. Band-aids, everywhere. Lights out during sex. Pants in the summer.
Honestly, the only reason I think I can be so open about it now is that I have it under control. As I write this my skin is clear… of boils that is. Still riddled with scars, but healthy, not swollen or red or painful. Dark spots mark where they used to be. Healthy, for the first time since I can remember. How, why? Paleo. Autoimmune Paleo. Whole30. FOOD.
It’s been a long journey; I’ve had to examine my resolve many times. I’ve had to begrudgingly give up foods I was clinging to. Many tears have been shed, especially when my skin flares. But I’ll tell you… what I now call a flare-up is a regular-sized pimple that lasts no more than a day or an old scar swelling that also lasts no more than a day. No more are the days of multiple boils, which drain and swell over weeks and months. I’m still fine-tuning my diet. I often yell to the skies, why me? Why do I have to give up so much?… but then again it’s worth it. Will I ever eat a hot dog at a ball game or order pizza with my kid?… no.
I WILL be happy, healthy & not in pain. My scars will fade, and along with them, the emotional scars too.
What I’ve learned….
Hidradenitis Suppurativa is an auto-inflammatory/ autoimmune disease. The root of the cause is inflammation. This inflammation can be caused by a leaky gut, an inflammatory diet, poor digestion, and an impaired ability of the body to detox properly (root causes vary). Hormones can also affect HS, and blood sugar dysregulation can drive hormone imbalance.
How to reduce inflammation with food post here. About SIBO here.
To get your hidradenitis suppurativa in remission you need to heal your leaky gut and reduce inflammation. Work on managing stress, proper digestion, and keeping your blood sugar stable. To heal your leaky gut you need to find your trigger foods & stay on an anti-inflammatory diet until you see progress (less, no, or shorter flare-ups).
What diet Helped my Hidradenitis Suppurativa?
Autoimmune Paleo Protocol or AIP Keto is what got me in remission.
What does that mean? NO: grains, dairy, legumes, nuts, seeds, processed foods of any kind, chocolate, coffee, nightshades (pepper, eggplant, potatoes, tomatoes) & eggs.
- YES: Lots of vegetables, organ meat, seafood, pastured animal proteins, fruits, coconut (will be your BFF), coconut aminos (are a lifesaver), tallow, lard, coconut oil, olive oil, bone broth.
- NO: to processed foods, lots of starch or sweeteners
- YES: to healthy fats, lots of quality protein, and real salt.
Switch to a non-toxic lifestyle to improve symptoms of Hidradenitis Suppurativa:
- Yes to holistic topical care strategies and non-toxic living!
- Once you begin to feel better you can start adding in foods little by little. Keep a journal. Write down everything. Read. Read a lot. Shop. Plan. Batch cook. Join the community.
My Resources:
- Conquering Inflammation
- Guide to the Autoimmune Protocol
- What are Nightshades?
- Try my AIP KETO Reset as a 15-30 day elimination protocol to balance blood sugar and reduce inflammation.
- Starter Guide for AIP Keto
- Importance of Fatty Acid Balance for Managing Inflammation
- Holistic Hidradenitis Suppurativa Course
Other Resources:
- The Paleo Mom, blog: thepaleomom.com, books: The Paleo Approach, The Healing Kitchen
- Autoimmune-Paleo.com, related books: Mickey Trescot’s The Autoimmune Paleo Cookbook
- The Phoenix Helix, Eileen Laird, awesome podcast, articles, and just a constant stream of information.
- Go on Instagram, search #AIP #autoimminepaleo #autoimmuneprotocol, and reach out to me @thecastawaykitchen.com
- Whole30’s are a great way to get in gear. If you’re worried about going full AIP, do a Whole30 first, and start eliminating inflammatory foods little by little. Before you know it, you’ll be crushing your elimination phase.
- Get my cookbooks!
Lastly, talk about it. Reach out. You don’t have to do it alone.
My personal AIP Journey in a Nutshell
I lived with HS for 18 years. Stage 2 + 3 in 4 areas of my body for most of my life until I was 30 years old. That was when I finally said enough.
My elimination phase was a little wonky. I read The Hidden Plague by Tara Grant. She has HS, she put it in remission, it was a good read that outlines an altered AIP diet. I think AIP diets vary per individual. It still helped, but in the end, after keeping coffee, almonds & cashews in my diet in the beginning I took all nuts and seeds out for a while. I read The Paleo Approach, read all the blogs… went back to the basics. AIP Elimination phase has to be militant… temporary, but militant! 6 weeks later, I started adding foods back in. Not going to lie… I started with wine… then eggs! After 4 months of reintroducing and testing foods, I found my trigger foods for my hidradenitis suppurativa diet.
I can’t do nightshades or gluten at all! Lactose is also a trigger. Very starchy vegetables like yuca as well. Nuts and seeds are fine in limited amounts. Eggs are perfectly safe (win!). No sugar. I’m very sensitive to sweets, even honey, and maple syrup. Little sleep/lots of stress are major inflammation triggers. I can do small amounts of wine or tequila, but not often. I stick to quality protein, salmon, oysters, red meat, lots of green veggies, bone broth, lots of water, and dark chocolate 🙂
- Updated #1 (October 2016): I have found that guar gum and xantham gum make me flare, it starts with a migraine.. If I keep consuming it, my HS will then flare. Since I wrote this I have done a few more Whole30’s. I can eat most nuts and seeds too. I can eat rice without flaring but usually, don’t. I can eat some cheeses (lactose-free). Still no nightshades. Alcohol and I don’t get along. I have started working out, a lot. Spinning, HIIT training, and weightlifting. Things have only gotten better and my scars are actually fading! My body is really changing. I feel really strong and capable of anything.
- Update #2 (August 2017): Still thankful for the miracle that is the AIP and the dedication I have had. Almost 3 years paleo! Nightshades and stress are my biggest triggers. I have also started working on balancing my hormones and am seeing great results! I am doing a combination of keto (low carb/no sugar) and paleo (no grains or dairy) and I feel really good! My scars continue to fade and my body keeps changing. It’s so much stronger and leaner than it was before. It’s been an amazing journey and I’m not done yet!
- Update# 3 (December 2018): I had 2 flares in the last year due to ingesting nightshades, but in remission otherwise. After being fat-adapted for over a year, and starting my NTA training, I have begun to use strategic supplements like digestive enzymes. Nothing crazy. The benefit is that I have been able to add some foods back into my diet. I still do a super clean, low-carb paleo without nightshades and have no plans of stopping.
- Update #4 (April 2019): I have had no more flares and even though I might have ingested nightshades on one or two occasions. Remedying my low stomach acid and lingering lower GI issues (SIBO) has been great. Taking omega3 and really honing in on nutrient density these days. I feel the best I ever have! My inflammation is gone and my HS hasn’t shown any signs. I am doing Orange Theory Fitness, I feel like my body is much more resilient! Happy Day!
- Update #5 (June 2020): I’ve had 2 flares in the last year, one was pretty bad the other went away in 48 hours. These came on due to the combination of VERY HIGH STRESS and the ingestion of a trigger food (nightshades). While I’m glad that once the flare was over, I was back in remission, I did take antibiotics for one because I developed cellulitis- but then reacted to the antibiotics. Fall 2019 to Summer 2020 has been a very hard year. From launching my second book during a pandemic to my husband deploying. However despite all the drama of my life, and high stress, my body has been pretty resilient. I have eaten tomatoes once or twice without consequence. Dairy seems to be okay these days. At the moment I’m in remission and feeling good. But the last year has shown me that HS is forever, and it will always take lifestyle and diet to keep it in check.
- Update #6 (February 2021): My HS hasn’t flared again, but overall the insane year caused some overall inflammation issues. I’m currently back on a short AIP reset. Leading a group in March through my coaching program Better Together. Feeling good again and really happy for life to go back to normal *hopeully* soon.
- Update #7 (October 2021): HS and inflammation overall is really good, and very low. I have tattoos over my scars with success. Feeling really good. I’ve added a lot of foods to my diet like chickpeas, brown rice, and limited amounts of cheese without reaction.
- Update #8 (September 2022): We moved back to Hawai’i in January and 5 months later Justin and I split up (after 13 yrs together). While it’s been amicable, it has been really stressful, divorce is never easy with kids involved. In the Spring my gut was in REALLY good health, no inflammation and I was able to add potatoes back into my diet and some other nightshades in moderation. Then I got Covid, followed by Strep. In the month that followed, I had 2 flares. Nothing that bad or that lasted too long, but enough that I cleaned up my diet and leaned into self care. Definitely, a reminder that HS is forever and takes constant work to stay in remission. Getting sick, taking antibiotics, stress – all these things impact that. But I’m okay!
After putting my own HS in remission with diet and lifestyle I got certified and an NTP to understand the how and why of it all. I has compiled all of my research, experience, and resources into one master class Holistic Hidradenitis Suppurativa. It is not just a course, but it’s YOUR journey to understand your body, your disease, your hidradenitis suppurativa diet and how to feel in control! At “Holistic HS” we understand the challenges you face on a daily basis. That’s why we’ve created a step-by-step program that addresses the root causes of HS, focusing on the powerful connection between gut health, diet, and inflammation. Our course combines scientific knowledge, practical strategies, and extensive resources to empower you on your journey toward long-term relief.
Christina Constantino says
I read your blog two years ago and have been applying your suggestions ever since. Your advice surrounding nightshades has helped me tremendously. Thank you for posting this. You have done more for my wellbeing in this area than countless doctors. Thank you.
Cristina says
Christina! Thank you for sharing that with me <3 It means a lot!
Claudia says
Gluten is my trigger, so I avoid it. And I found that zinc supplements help for me. Usually I take 60mg, but when I feel one coming on or know I am at risk for getting a new outbreak I bump it to 90mg. And I also use diaper rash cream!! The more zinc the better. It calms it and once it drains I use it to heal the wound. Last year I only had 2 outbreaks and so far this year only 1 (bad one)!
Cristina says
thanks for sharing! Zinc definitely helps!I’m working on a PDF for HS and I have some good info on zinc linked
Maitu says
It’s very useful, I have got a son with the the same disease, he is struggling a lot, please help too
Cristina says
I don’t have anything for the scars, time has let them fade
Nazia says
Thank you so much for sharing your story with us, I really apprecaite it and im sure others do too. Do use use any products for your hidradentitis scars?
Cristina says
Hugs!
Ayannah Richardson says
I’m tired and want to be able to raise my child pain free. PLEASE HELP
Cristina says
Start with the Autoimmune Protocol: https://thecastawaykitchen.com/what-is-the-aip/
Louise says
Thank you so much for sharing your story. I have had this since I was 13 and I’m 31 now. I’ve only ever found one cure and that was a contraceptive pill but unfortunately I had visual disturbances and had to come off it. I would love to try the diet but what I am afraid of is where do you start and what do your meals look like. So what meal ideas would you have.
Simone says
This was absolutely inspirational! I’m 20 and I’ve had hs for 7 years. After being misdiagnosed I finally had surgery 4 years ago in which all the lymph nodes in my right underarm were removed. I thought everything was perfect until I had my first flare up since surgery a few weeks ago, and it’s still growing and draining. I’m on day 5 of AIP and I love it so far, but I am still dealing with my flare up. However, this really motivated me to become patient and hopeful for a future without hs. Thank you so much!
Amber Woodruff says
This was the best read ever and it most definitely helped me! Omg I can’t wait to start and try everything you just said.
Lina says
I just now found your page. Thank you so much for what you do. I have had HS since I was 15. I’m 48 now. I’ve had several surgeries under my arms and breasts. It always came back. I had done keto on and off. In 2013 I was going through a lot plus HS. I was recommended a Beverly Hills plastic surgeon who boasts about helping HS patients. He convinced me that I needed a nipple lift because of the amount of breast tissue he was going to remove. Because of the nipple lift my insurance would not pay for the medical HS part of the surgery. I ended up taking out loans to pay for it. Well this doctor moved skin from my back, flaps, and put it under my arms. The whole surgery lasted 12 hours. I ended up having to have another surgery because one of the underarm flaps died, got a skin graft, and sutures ripped open on my back and breasts. After everything I ended up with more scars that before and flappy thick skin under my arms. I would have prefers he did skin grafts on both underarms, which is what I wanted, and not touched the skin on my back. Anyway, now in 2020 I just grew a boil on the armpit with the flap skin. The whole ordeal is very depressing to add to all the stress I was already going through with family issues. It’s part my fault for not getting a second opinion. Regardless, I have always tried to keep a positive outlook. I had lost weight and he a baby 2 years ago and gained it all back. I’ve been on keto now for over a month and hope to lose weight and get back into remission. I hope some day I can have a plastic surgery to fix the issues caused my that other plastic surgeon.
San says
OMG. I am so glad I stumbled across you. I have been battling in secret with this for years. Why don’t doctors understand this yet! Can you please share vitamins/ supplements you take. My scars look like yours in the beginning. I’m trying to start my heeling process.
Cristina says
It’s not really about supplements, but a whole lifestyle change. You can read more about that here:https://thecastawaykitchen.com/autoimmunity-healing-and-whole-food-keto/
Heather says
How long did it take you to go into remission? I’m currently on an AIP diet and feel I’m having my first or second HS flare. I’m not sure that’s what it is, but it sure seems like it. Since I’m already doing AIP when this happened what could be triggering it ?
Cristina says
It took a long time, about 4 months to see improvements like shorter or less flares and almost a year to get into full remission. But I think 75% remission is considered clinical remission. Anyway, just because you’re on AIP doesn’t mean flares will stop at once, there are a lot of factors, hormones regulating, detox, gut healing etc.
bryan says
My hidradenitis developed over about a years time until i had tunneling boils in my groin and armpits. This was about 6 years ago. I happened on a comment in a blog post about the paleo elimination diet helping. I went all in. within 6 months not only were the boils gone but i had lost 60lbs. within a year all the redness was gone as well. I slowly added foods back into my diet and found out that adult onset egg allergy was causing the boils. These days im pretty much eating carnivore with a few fermented carbs(beer). any other carbs mess with my heart rhythm. Thanks for posting this info as it was a post like this that saved me. I was very desperate. Final note from my experience is never ever mess with the boils by squeezing them. It only made them worse and heal slower.
Cristina says
thanks for sharing your story Bryan. Food definitely heals! While I think carnivore can be a great elimination protocol, but I’m big on finding root causes for long term remission without having to live on a restricted diet.
Julianne says
Hello, My name is Julianne
My boyfriend has HS, he is overweight and says its painful sometimes to get to the gym. I have been reading everything i can find about getting him on a proper meal plan. (I am a gym nut myself but am having trouble with his meal prep)
I was wondering if you could tell me more about the foods you eat and how i can further understand so that i can help him.
Thank you.
Cristina says
Hi Julianne, check out the other articles on my blog, like my Healing Journey that talks more about how I eat, I also have a post that explains AIP and PAleo and Keto and of course my book Made Whole is a great resource!
Ruby jean alarcon says
Hi i was diagnose hs last year been with a lot of surgery last thursday was the latest surgery its very painful and very expensive specially here in phillipines and were not yet educated about this conditions i hope i can able to find which food can triggered my hs cause right now im so depressed and broke at the same time its really hard for a solo parent like to handle this. But thank you guys i am enlighten that there is still life in this condition
Cristina says
Hugs Ruby! We all know how hard it can be. One step at a time. But yes, it can get better!
Slayte says
I think it’s time to try this. Was only recently diagnosed w/ HS although have suffered for years. The dermatologist is recommending/pushing back Humira but I’m not sure I want to fry my autoimmune system when I’m already dealing w/ an autoimmune disease. A wellness doc had me try this last spring and I felt great! But really didn’t understand the significance of the new way of eating (and quickly went back to my old ways) primarily bc we never discussed HS.
Jen says
I just turned 18 and I’m a Hurley Stage 2. It’s really scary knowing the extent of HS. I’ve spent the past few days researching to find the best way to control the spread. I’ve had multiple rounds of shots to the leg and pills, both were temporary. However today I noticed my lump was twice it’s original size so I think i’m going to start the AIP diet immediately. I dearly hope for improvement.